Experiences of the Oregon Children with Medical Complexity

CoIIN Team 
The Collaborative Improvement and Innovation Network (CoIIN) to Advance Care for Children with Medical Complexity (CMC), which is funded through HRSA’s Maternal and Child Health Bureau, is a multi-state quality improvement (QI) initiative to test and disseminate promising care delivery strategies and payment models for CMC. Oregon is one of 10 states participating in the CoIIN.

AMCHP staff member, Stacy Collins, recently interviewed the following members of the Oregon CMC CoIIN team about their project:

• Alison Martin, Title V Children and Youth with Special Health Care Needs (CYSHCN) Assessment and Evaluation Manager, CMC CoIIN Team Lead
• Ana Valdez, CoIIN Family Leader
• Reem Hasan, CoIIN Clinical Lead, Departments of Internal Medicine and Pediatrics, Oregon Health & Science University

Their responses to questions are set out below.

How did you choose your CoIIN target population?

Our CoIIN project aligns with one of our state’s Title V CYSHCN national performance measures: transition to adult health care. According to the 2017 National Survey of Children’s Health, 86 percent of Oregon CYSHCN who receive care in a medical home do not receive transition services. We used the Pediatric Medical Complexity Algorithm (PMCA) (Simon et al., 2014) to determine which diseases fit the complex chronic disease category. Using the PMCA definition is a way to align our project with other efforts occurring in the state. Oregon is the only CoIIN state team that has had a primary focus on transition to adult care throughout the duration of the CoIIN project.

Tell me about your project aims. 

Our project focuses on family engagement, health care transition in primary care, coordination of care (to prepare for transfer to adult health care), and alternative payment methods. A key barrier for clinics that want to implement transition activities is the difficulty in getting paid for activities to prepare for a transition. Existing codes that could be used offer inadequate provider payment. We have been exploring payment options with Got Transition® and our state partners, and we’re keeping our fingers crossed [that we can get funding sources].  

What role does Oregon Title V play in the CMC CoIIN project?

The CoIIN project is housed within the Oregon Center for Children and Youth with Special Health Needs (OCCYSHN), which is Oregon’s Title V CYSHCN agency. Alison Martin, our team lead, participates on OCCYSHN’s leadership team and manages OCCYSHN’s Assessment and Evaluation unit. Title V brings the systems perspective to the project and serves as the critical bridge between families/young adults and the provider community.

Family engagement-—and power-sharing between Title V, providers, and family members—has been an important focus of the CoIIN. How is it demonstrated? 

Ana Valdez reported that she is one of two family leaders on the Oregon CMC CoIIN team. BranDee Trejo is the other family leader. Ana’s 15-year-old daughter has complex medical needs. Occasionally, her daughter consults with our project team to offer her expert youth perspective. Ana believes the project takes family engagement seriously. Relationships within the team are built on trust and respect; family input is never skirted.

Alison Martin elaborated that the CoIIN project is committed to power sharing and consensus decision-making. All CMC CoIIN team members are treated as equals. The team has no hierarchy, and people are addressed on a first-name basis only. The team meets bi-weekly to solve problems and address unintended consequences of decisions or actions. In between meetings, members produce a bi-weekly digest to keep everyone updated. The team is very intentional about ensuring family perspectives and viewpoints don’t get lost in the shuffle. 

Peer learning is a hallmark of the CoIIN model. How has it benefited your work?

The peer learning that occurs from our CoIIN experience has many benefits for our project as well as the overall Title V CYSHCN work. It’s validating to hear how other states have been challenged by the same issues and found workable solutions. Some examples of what we’ve learned from other states at the national in-person CoIIN meetings:

• The Washington team uses a text communication system to collect family survey data, which we’ve adapted to suit our needs.   
• Colorado’s program that implements community-based practices to care for CMC provided us with valuable information.  
• It was validating to hear that the Minnesota team faced similar challenges to those of our team when they added transition from pediatric to young adult health care to their project focus.

Although face-to-face peer support is not available during the COVID-19 pandemic, the virtual CoIIN cross-team learning is still energizing and inspiring.

The CoIIN project is fundamentally a QI initiative, and the process of learning and testing is as important as improving outcomes. Can you provide examples of your QI efforts?

Looking at the clinical aspects of our project, we learned that readiness for transition from pediatric to the adult health care system is a challenge for families and providers alike. Data from the first phase of our project indicated that more than 60 percent of primary care pediatricians did not want their eligible, medically complex 17-year-old and older patients to be approached to join the CoIIN project. We realized that we must change and normalize the culture related to transition because transfer to young adult care is inevitable. Moreover, adolescents and their families need support during this developmental stage. To address this need, we changed the targeted age range for transition to 13-year-olds through 15-year-olds during our project’s second phase. This QI adjustment will allow patients and their families and current providers more time to prepare for a change in providers.

Looking at the family engagement aspects of our project, our team has reflected on how to improve transparency. We used the Family Voices® Family Engagement in Systems Tool (FESAT) to assess family engagement in the project. Although our team scores above 90 percent generally and on the subcomponents, our transparency score is the lowest. We take the transparency rating seriously. When we discussed transparency with families, we learned that family leaders require more time than they had been allotted to reflect on information.

This project is not a part of their day-to-day job, so we’ve adjusted meetings and email communication to accommodate their needs. The FESAT has provided useful feedback on areas that we can improve upon.

Based on your collective experience in the CoIIN, what is the most important advice you can offer Title V programs that want to consider this work?

Transition requires a culture change, and culture change is hard work. Families and providers must talk about transition from pediatric to adult health care, just as they would discuss puberty and other adolescent milestones. Quality improvement projects related to transitioning pediatric CMC patients to adult health care must also consider payment barriers so that this work can be sustainable.  

CoIIN Team: Simon TD, Cawthon ML, Stanford S, Popalisky J, Lyons D, Woodcox P, Hood M, Chen AY, Mangione-Smith R. Pediatric Medical Complexity Algorithm: A New Method to Stratify Children by Medical Complexity. Pediatrics. June 2014, 133(6) e1647-e1654